VNS vs. neuropace

Tiara · #1 03-03-2008, 10:49 PM

i just spent a week in the hospital hooked up to an eeg machine. after that we are now looking at the VNS. we had originally thought about neuropace. but my seizures spread to fast and with what i have been through so far it is extremely hard to find the orgin. if anyone knows anything about these two surgeries please let me know. thank you!

**RobinN** · #2 03-03-2008, 11:12 PM

Yes we have a few member that are well versed in this. Have any other alternatives been suggested?

My daughter is going to begin Neurofeedback in a week.
It is non invasive and has a good reputation. They are helping VETS for free who come back from the war with PTSD.

You might get an answer later this evening or perhaps tomorrow.
Or if you see Birdbombs posts, you can link to some more info from the signature at the bottom of her post.

**Bernard** · #3 03-03-2008, 11:30 PM

VNS = "pacemaker" implant that stimulates the vagus nerve (an important nerve that connects the brain with a lot of important organs).

neuropace/RNS = "pacemaker" implant that stimulates the brain directly. The RNS is still undergoing trial studies.

I'd recommend trying EEG neurofeedback if you can swing it. See the chart in my signature for more info on all 3 options.

shawn33 · #4 07-02-2008, 09:10 PM

Hi There. I had the VNS for 11Years and it didn't do a thing for me, and i HATED the side effects. As for the RNS that has helped me noticeably well.
I have the complex partial seizures and the simple partial seizures. With a complex i go into a brief amount of time in a staring spell, where i'm 100% unconscious. Then after that I'm totally confused for 4 to 5 minutes. Now with the RNS, it stops the confusion FAST my family and friends say. It's just similiar to the VNS in one way. The RNS and the VNS have to both be reprogramed until it gets to a setting that's helping you.
Now the RNS, the computer chip holds some memory of the EEG from the seizure that you have. Then from the neuropace lap top you can download your EEG to your neurologist's office. I just had the surgery to get a new battery for the RNS, so we shall see how it goes. If you'd ever like to talk about the RNS or the VNS, I'm shawn33
Sincerely
shawn33

**Birdbomb** · #5 07-03-2008, 01:55 AM

Welcome

I would suggest you join my site to begin your research. I have the top message board devoted solely to VNS. The posts are by people with VNS or those considering it. With over 1000 members experiancing almost aspect known, there's a LOT of good info there!

Belinda5000 · #6 08-09-2008, 04:37 PM

The VNS works with my drugs sometimes.
I was turned down for neuropace.
I haven't heard the final word on the RNS yet.

Belinda

shawn33 · #7 08-09-2008, 07:11 PM

The wire from the VNS is attached the the vagus nerve on the left side of the neck that runs right up to the brain. Then basically the vagus nerve sends the brain the stimulation. But over time you'll probably have to have surgeries where scar tissue will need to be removed from the vagus nerve. That's because the electric voltage on the nerve scars it over time. Then because of the scaring the nerve doesn't get the stimulation as well as it used to.
As for the RNS it's a computer chip that's powered by a battery. Then the wires from the computer chip they can implant into several parts of the brain where the seizues are coming from. Not just one spot. As for mine, the wires are implantedinto the left lobe, and what's left of the right lobe.
Sincerely
shawn33

shawn33 · #8 08-09-2008, 07:17 PM

To be 100% qualified for the RNS you have to be 18 or older, and have 3 or more seizures per month. That's how the FDA want a qualified candidate to be. So far mine has been activated for a little over a year and a half. If you'd like to know any more info about it, you can email me at [edited], and we can talk about it.
Sincerely
shawn33

shawn33 · #9 08-09-2008, 07:37 PM

Tiara,
The were feeling that mine EEg was going the same way. They weren't sure if mine were coming from the right or left temporal lobe. But then they noticed that it looked like the HIGH majority of the time it started out from the right temporal lobe. So he asked if it was OK to do the surgery there. I said yes, and after they cut me open they found a ton of scar tissue there. So that lobe was removed, and my seizures were reduced from over a little over 100 per month to 8 to 12 per month. Then in the next EEG they saw that the rest were coming from the left temporal lobe. But he said that can't be touched since the right side was removed.
Sincerely
shawn33

**Bernard** · #10 08-10-2008, 12:58 PM

There is also a lot of detailed info on the RNS in this here: http://www.coping-with-epilepsy.com/...inea-pig-1286/

Belinda5000 · #11 08-11-2008, 05:15 AM

Originally Posted by Bernard

:

There is also a lot of detailed info on the RNS in this here: http://www.coping-with-epilepsy.com/...inea-pig-1286/

I'm always turned down for everything so it doesn't surprise I haven't heard anything back from the RNS.
I know all about the VNS and it doesn't work so great for everyone.
I was in guinea pig city for 6 months of my senior of High school.I was at NIH.

Belinda